Core principles for involving people with dementia in research: innovative practice

Abstract

The Scottish Dementia Working Group Research Sub-group is part of the Scottish Dementia Working Group, an internationally renowned campaigning group of people with dementia. We co-created our core principles for involving people with dementia in research between September and December 2013. The principles address six areas: (i) how people with dementia are valued and involved in research, (ii) lived experience as valid knowledge, (iii) physical and emotional safety, (iv) accessibility of all aspects of research, (v) training for researchers and (vi) the impact of our experiences of time on research processes. Through our core principles, we challenge researchers across all disciplines to re-consider how we and other people with dementia are involved in research as well as how knowledge in dementia research is created.

Keywords: participation; people with dementia; research.